The fight to protect the medically fragile just got harder because of COVID-19

A Richardson couple struggles to find medical supplies to care for their 27-year-old son with disabilities.

In a photo taken through the window, Kelly Beller watches her 27-year-old son, Sam. Kelly and her husband, David, have spent Sam's entire life caring for him after he was born with a rare neurodegenerative disease.(Tom Fox / Staff Photographer)

Kelly Beller watches her son Sam, as he lies in bed watching an episode of Mister Rogers’ Neighborhood. “Does this virus make you mad?” she asks.

Sam’s cheeks pull back from his teeth and the muscles in his face relax. That probably means he’s frustrated, Kelly says. Sam cannot talk or walk or move anything more than his head. But his parents have learned to communicate with him through subtle facial expressions.

Kelly tries to explain to her son — a childlike mind in a grown man’s body — why he can’t go anywhere for a while. “Once the big virus is over, then we get to go to school again,” she says. “We get to go to church. The [Dallas] Arboretum. We get to go down in the neighborhood. We get to go shopping. We get to go to the aquarium.”

The Bellers are like many families that are caring for loved ones with chronic illnesses — loved ones who are most at risk of dying from complications of COVID-19. Every day of Sam’s life has been a fight to stay alive. That fight has gotten harder.

Sam Beller, with parents Kelly and David, was 7 years old when he first required a ventilator to breathe. Now 20 years later, Sam lives a healthy life with a home ventilator, 24/7 nursing care and physical therapy.(Tom Fox / Staff Photographer)

Kelly, 55, and her husband, David, 54, have spent 27 years caring for their son, who was born with a rare and degenerative neuromuscular disease with the complicated name Pontocerebellar Hypoplasia with Spinal Muscle Atrophy. When he was a baby, his muscles grew weaker over time. He struggled to sit up and swallow his food. Most children diagnosed with PCH1b, as it’s commonly known in the medical community, don’t survive past 4 to 6 years old.

Sam was 7 when he first required a ventilator to breathe and 13 when he needed one full time. He’s had more than 10 surgeries and was hospitalized with pneumonia 13 times as a child.

Sam’s parents had to fight the state of Texas to get medical coverage when, at 21, he transitioned off a Medicaid waiver program for children. When the state denied 24/7 nursing care and specialized treatments, the Bellers repeatedly appealed and won access to Sam’s managed health care.

It’s a battle they face every year to renew his coverage in Texas’ Medicaid managed care program called STAR+PLUS for people with disabilities or age 65 and older. But even with private coverage through UnitedHealthcare and the Medicaid coverage, the Bellers still pay out of pocket for Sam’s head-to-toe care.

Today, as far as the Bellers know, Sam is the oldest person with his particular diagnosis, a genetic disease affecting only 50 people worldwide. He lives a relatively healthy life with a home ventilator, around-the-clock care, and physical and speech therapy services.

But two weeks ago, as the coronavirus crisis escalated in North Texas, one of his seven nurses began working overtime at a hospital. Kelly posted a plea on Facebook for supplies they needed for Sam's care because the shelves at the grocery store were empty. They also started providing the nurses washable masks.

The entire Beller family lives and works in their small Richardson home: David is an architect. Kelly works in IT. And Sam’s three younger siblings, all in their 20s, are living at home for the time being.

Sam Beller in his room at home with (from left) his father David, nurse Michelle Erving, mother Kelly, and sisters Simone and Tevah. For families like the Bellers, caring for loved ones most at risk of dying from complications of COVID-19, every day feels like a fight.(Tom Fox / Staff Photographer)

Sam’s home is also his hospital. What used to be the living room is now his bedroom. It’s stocked like a medical supply closet and filled with an oxygen tank, treatment machines to keep his lungs healthy, and even a portable chair, attached with ropes to a track on the ceiling, so nurses can easily move him to take a bath.

But he’s a lucky one, Kelly says. Other PCH1b families have to face “a crisis within a crisis” because they have a child sick at a hospital. The Bellers’ biggest worry right now is unknowingly carrying the virus into their home.

Kelly and David began sheltering in place before the city of Richardson mandated it. They wore masks and gloves in public before the Centers for Disease Control and Prevention changed its recommendations. But the Bellers know that no matter how hard they work to protect their own family, they could still get sick.

“We need our whole community working hard to help protect those who need protection, and to honor the fact that the medical community is really stretched right now,” Kelly said.

They thought they’d just get their groceries delivered, but Kelly found the grocery delivery services were overwhelmed with orders. Now Kelly or one of Sam’s siblings goes out once a week for food, supplies and prescription drugs. Kelly has a hard time finding what for Sam are medical necessities: Clorox wipes, Tilex with bleach, rubbing alcohol and white vinegar needed to clean Sam’s equipment, at constant risk of breeding bacteria.

After shopping, Kelly leaves the bags in the garage until she can wipe them down with disinfectant wipes. She even brought a blanket and draped it over the shopping cart.

Sam’s parents worry about the struggle that would ensue should the virus find its way into their son’s lungs. They worry if the shortage of ventilators in hospitals will mean a doctor will have to decide between her son and someone else.

Last year, Sam’s heart rate was having long pauses, which increased his risk of having sudden cardiac arrest. So he had a pacemaker implanted in his chest in February. While the Bellers were wrestling with the decision to continue the fight for Sam’s health, someone asked them a question: “What are you keeping him here for?”

David and Kelly know Sam probably won’t outlive them. When he was a child, they bought burial plots for the three of them. But for now, they are following Sam’s lead. “He fights every day,” Kelly says. “His desire to be here is clear to us every day. And he’s not given up.”

These days, the Bellers try to find joy and laughter whenever they can. They remember that although Sam is a grown man, he’ll still be their “forever kid.”

David will pat on Sam’s belly and pretend it’s a drum. He’ll make up songs to the rhythm of Sam’s pulsing medical equipment. They’ll clap and whistle. And he’ll put Sam’s hand in his own and shake it. He’ll tell his son he’s doing a good job and that he’s a hero.

“Right now, we have to stay home. Is that fun though?” Kelly asks Sam. He grins widely, his eyebrows arching with a “yes.”

“We have everyone in the house. Just like old times,” Kelly says. “That’s the good part of it. Everybody’s here.”